Sorry :( I'm a crappy blogger!!!

Well, I'm officially admitting that I suck at staying up to date on this. I really wish I was more committed to making time to update here. But, I will do my best and that's the best I can do, right?

Well a lot has happened since Hunter's palate surgery and there are a few things from that time I wanted to touch base on real quick: It took awhile for Hunter to actually take formula. It was really concerning to me, but I just kept trying. There was some packing (gauze stitched into the roof of his mouth) that was removed the next morning, and after it was taken out he started to eat much better. He had problems with the right side nasal stent starting to come out just shortly after arriving home. It fell out about two weeks later, so the doc removed the other one. We got one that needs to be taped in every night. It is rather difficult. I don't believe they were made very "user friendly" as the "tabs" are very smooth and just slide right out of the tape. But it's a work in progress and we're finding new and creative ways of trying to keep it in.

On to more recent news: Hunter is beginning to take his first steps. He can travel on foot for short distances between two points. He recently turned ONE last saturday. He has been doing SO well. He has begun to point at things and say "whas dat?" He is a very happy, healthy baby.

Pictures:

This was the day after his Palate Surgery

Still a bit groggy, but ready to get moving!

Trying to find ways to get those arm restraints off!

Changed into some clean clothes and ready to GO!!!

Believe it or not, That's a SMILE!!!

He kept getting upset because the IV only let him go so far!

 

This was the night we got home from the hospital, all he wanted to do was feed himself, so I put socks
on his hands, and cut the syringe on his "bottle" down so he could do it himself!!

This was on his 1st birthday!

Palate Repair/ Nasal Stents

Well, It's been a long time, I know, but, better late than never. We are currently on night number 2 of our hospital stay for Hunter's palate repair surgery. Everything went well. He is doing great. We arrived at the hospital at 11:30am Tuesday May 15th. Hunter went into surgery at 1:30. At 4:30pm we got him back. He was absolutley miserable. He was hurting and bleeding (not badly, just occational drops from his nose and drooling blood from the corner of his mouth) and there was nothing I could do to help him. I tried to hold him but he kept ramming his face into my shoulder. So even trying to comfort him, I was hurting him. I felt as helpless as he looked. He slept pretty good the first night, all things considered. He would wake up crying, I would pat his back or chest and he would fall back asleep. Sometimes he would get pain meds. He had been taking pedialyte so today we needed to get him to drink some formula. At first it was not going too well. However, later in the evening, we got him to take a significant amount of formula, and some pedialyte too. Hopefully, tomorrow morning he will be off the IV fluids. We are hoping to be heading home tomorrow afternoon!!!

Made this video for Hunter while I sit and watch him sleep:

I do declare, "A Lip Repair!"

Well, I pushed this post off until the very last minute didn't I?

On Dec. 6th., Hunter went to the hospital for his lip repair surgery! As the days were closing in on the repair my stomach just kept churning and I would just stare at him and soak him in!



A smile to remember



I was so scared about losing the smile I had come to know and love. I was very nervous that he would go in for surgery and when he came out I wouldn't feel the same about him as I did in that moment. Needless to say, the second the nurses brought him back to me safe all of that melted away and I was still as in love, if not more, with him as I had always been. I only lost my composure for a moment of two. The minute that the nurse picked him up to take him away my heart sank into my stomach and the second that she walked out the door with my son there was nothing I could do to hold the tears in. It seemed as though he had just left when the ENT came in and told us that his tubes were in and her job was done. Then it was only like an hour or so before the plastic surgeon came to tell us that he was done. The time that took the longest was waiting for Hunter to come back to me. I paced the room, in and out of the hallway, just waiting to see him. Then there he was, and oh boy did he look just miserable.



Back in my arms



 The next day we learned to feed him with a syringe. My sister had actually been there with him and was the first to try this new technique, and if I do say so myself she did fantastic. I was the last one to catch on to feeding him this way. He could only have pedialyte until we left the hospital later that afternoon.



pedialyte via syringe



We also had to clean his lip and nose a little bit at a time with some sterile water and a cotton swab. He had to wear arm restraints (which though torturous for him, were super cute!). [Just a hint for other mama's of cleft babies: arm restraints fall off pretty easily - to keep them on we had Hunter in long sleeved feety outfits and cuffed the end on the sleeve over the bottom of the arm restraint, warning: it doesn't take them long to figure out how to just take their arm out of the whole sleeve, but at least at this point it's stuck in their clothes and away from their face!] Hunter pulled through like a champ. Once we got him home, he no longer seemed so helpless and miserable, he did so great with everything.



The day after surgery and smiling already!

 This month has been filled with doctors appointments, which has almost become routine at this point. We had pre-op, immunizations, surgery, follow-ups with plastics and ENT. Our Holidays were wonderful. The kids had a great time.

A Video for Hunter



A Happy New Smile for Hunter and

A Happy New Year to You!

Doin' The NAM Thing

The NAM

Okay, so, I admit I am WAY late on this post. Tough cookies - read on! On Aug. 31st Hunter got his NAM (Nasoalveolar Molding Device). We have been diligently taping this thing into his mouth day in and day out. Every week it gets adjusted at the oral facial prosthedontists office. This device brought the parts of Hunter's palate closer together. It also reshaped his face. A couple weeks ago the Nasal Stent was added to his NAM. This part with help shape his nose to hopefully give it a more semetrical look after surgery.



NAM taped in!

There's not too much to SAY about the NAM - other than the fact that it truly is AMAZING. . . I'll just let you see for yourself in the following pictures.



You can see how the shape of his entire face/nose has been transformed



After 2 months on the NAM - AMAZING!



The Details of Hunter's Cleft




Hunter has a bilateral cleft lip and palate. The cleft that he has on his right is a "complete cleft lip and palate". The lip is affected all the way up into his nose and the palate is affected through his gums all the way back into his mouth. His uvula (dangly ball, punching bag, or whatever else you want to call it) is divided in two.The cleft he has on his left side is an "incomplete cleft of the lip and an incomplete cleft of the palate". This cleft does not go all the way up into his nose nor does the palatal cleft go through the gumline. It does, however begin behind the gums and continue all the way back into his mouth.

Hunter will wear a NAM (Nasoalveolar Molding) device as sort of a retainer to get the two pieces of his palate closer together before his lip surgery. He will hopefully have lip repair surgery when he is 3 months old. Since his palate will be closer together this will cause less stress on the lip repair as the pieces of his lip will not have to be stretched as far. This will promote better healing for his lip (especially on his right side). At this same surgery Hiunter's nose will be worked on but not perfected. The main goal of this surgery is to get the lip and its muscles back to where they should be. Also, at this surgery, ear tubes will be placed if they are not placed in Hunter's ears before 3 months. Since he already has a nasty ear infection, an early surgery for ear tubes is a possibility.

Hunter's palate will be repaired sometime around the age of 12-14 months. At this surgery the pieces of Hunter's palate will be pieced togeher where they should be and his Uvulas will be brought together.

Many surgeries may follow this one. The plastic surgeon says Hunter will definetly need at LEAST 4 surgeries total (lip repair, palate repair, lip/nose revision before Hunter starts school, and bone graft when Hunter reaches dental maturity to put a bone in the empty gap of his gums.)

In addition to these, Hunter will need extensive orthodontic work. Braces, probable palate expansion (a procedure that requires head gear), and more.




WARNING: the included pictures are graphic real life depictions of Hunter's actual cleft lip, cleft palate, and divided uvula. If the paragraph above is enough to satisfy your curiosity and you do not wish to see the pictures, this would be a good place to stop.

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NOTE: I did not MAKE Hunter cry to get these pictures, I just caught him when he was already upset (hungry) and we were waiting for Daddy to come back with a bottle.

Complete cleft on his right affects the structure of his nose.



Hard to tell, but this is Hunter's palate.
Point of reference: the pink in the upper right of the mouth are
his gums where his two front teeth will come in.
The pink in the bottom of his mouth is his tongue. 




This picture shows Hunter's uvula is split in half.
(the two dangly balls in the back of his throat)



Hunter is Here!

Going to have a baby!

Arrived at the hospital to be induced at 7:00 am Wednesday morning (8/17/11). Started Pitocin, broke my water, and waited. Things were moving VERY slowly (if at all at times). When I finally hit 4cm and was able to have an Epidural, I decided to wait a bit. I just didn't feel like my contractions were strong enough for an Epidural. After awhile of more nothing happening and being stuck at 4cm we decided to get the Epidural and see if things would start to happen when I wasn't so focused on every little contraction. Well I have to say that I had the most brutal Epidural ever administered on any human being ever. The anesthesiologist tried 8 times to get the Epidural in. He kept on hitting my vertebrae. HURT LIKE HELL - and of course I couldn't move because well, the man had a needle in my SPINE! Well he finally got the damn thing in and it didn't take too long for me to start to feel better.. By this point I was off the external monitors and all of the monitors for the contractions and Hunters heart rate were coming right from the source.

Hurry up and wait!

I was so glad that all of my family was there. My mom, Dad, Sister, Husband (Josh), and for a good portion of time, my son, Avery.

Daddy and Big Brother!

Soon after my little one went to stay with my sister in law, the rest of my family got silly. It made for a good time even though we were all exhausted and my moms car had been involved in a minor fender bender in the parking lot because some teenaged twit was talking on her cell phone and not paying attention to anything else around her. Then some lady came in with my nurse demanding I flip over and get on my hands and knees to try to get things moving to "avoid surgery". I FREAKED out. She just walked in, started flipping me this way and that way. I couldn't feel my legs, let alone did I trust they could hold me up. On top of it all she said the "S" word (surgery). Well my SuperMom basically told her to shove off and I never saw her again. After that I kept having to roll from side to side to try to get things moving as far as getting Hunter to push on my cervix.

Side to Side, trying to get things going.

 Well by the end of the night I had not dialated past 5cm. My family all went home to get some well deserved rest (with the exception of my husband). This was sometime around 11:45pm. About 15 minutes later my OB came in to check on things and. . . no change. Hunter's head was beginning to swell and with nothing progressing she called for a C-section. SCARIEST WORDS EVER. Well the only anestesiologist that was there was busy with an emergency apendectimy, but as soon as he was done, we were going to go have a baby. Josh called my parents back to the hospital and filled them in on what was going on. I had decided that I wanted to be completley put under for the C-Section because Josh would not be able to keep me calm if I had to be awake while I was being cut open. It was very important to me that he cut the umbilical cord. Well, they got us all dressed up for going to the OR.

All dressed up. . . don't wanna go!

When it was time for the anestesiologist to come in and talk to me he had said that he did not want to put me under because it was more dangerous for me and baby to be completley under. Well instant change of plans because I just wanted to do whatever it took to bring Hunter into this world in the safest way possible for HIM. I agreed to be awake. I really wanted my mom to be there with me because I had to be awake, but Josh was already dressed for the job and I still really wanted him to cut the umbilical cord. So we went back to the OR and I managed to fit myself on the narrow table and I got all strapped down, legs together and one arm out to each side (imagine, if you will, a lethal injection execution). The anestesiologist (who was amazingly wonderful) began to administer the anestesia. . . 1st try - no luck - 2nd try - no luck - 3rd try - no luck. . . well. . . remember that brutal Epidural from earlier? It wasn't in the correct position to numb my body where my body needed to be numbed for the C-Section. So I ended up having to be put completley under anyway. I hate to disappoint you, but this is where we skip ahead (as I have no recollection of what came next lol). When I came to there were nurses rudely poking and proding my belly where I had just been cut open. I put an end to that immediatley. Things were kind of a bit of a blur and I couldn't see very well.

Hunter is Here!





Finally got to hold my Hunter! (look like hell but.. . who cares?!)



Josh had brought Hunter over to me so I could see him. To be honest, I could barely make him out because my eyes just could not focus. When I finally got to the post natal room I finally got to hold my baby. Hunter John. He was born at 1:30AM on Thursday 08/18/2011. 8lbs 15oz 20 1/2" long. Hunter was born with a complete cleft of the lip and palate on the right side and an incomplete cleft lip and incomplete cleft palate on the left side.



Papa holding Hunter

 My dad had held Hunter while I was waiting to be coherent enough to hold him. I just want to share this and why it means so much to me. My dad had never held a baby this small before. He married my mom when my sister and I were older. When my older son was born it took him at least 6 months to trust himself enough to hold him, and by 6 months my older son was a good size. My dad held my tiny baby when I couldn't. He let Hunter know that everything was going to be okay. He wanted my son to know that he was loved and safe. He wanted him to know so much so that he didn't let his fear of holding such a small baby stand in his way. When Hunter was born my dad's love for him grew so big that nothing was going to stop him from letting his grandson know from the first moment that he was going to be there for him now and for every time he is going through a tough time. This meant the world to me (when I heard about it after I came to, of course).

Mommy, Daddy, and Hunter



During my pregnancy my main concern was whether or not I was going to be able to feed Hunter. Feeding is often difficult for a baby born with a cleft. Hunter fed like a champ right away. They had been feeding him with a Mead Johnson Nurser. I had packed 6 different nipple/bottle combinations to take to the hospital - I was determined to find the best way to feed my baby. A nurse from the NICU asked if I had brought with me a Haberman. I had. She came up and we figured out the Haberman together and Hunter was feeding better than ever. I had yet to be successful at feeding him myself. For Hunters next feeding I asked to be alone with Hunter. I felt that without the pressure of someone looking over my shoulder, expecting me to be able to feed my baby, I'd be more successful. I was right. With just me and Hunter alone together feeding took less than 15 minutes. He is a feeding champ!

Daddy feeds Hunter with the Haberman

Another concern we had was whether or not Big Brother Avery was going to warm up to Hunter. During our stay in the Hospital Avery was not too keen on the idea of Hunter. He did hold him a couple of times in the hospital. When he wanted him he wanted him but when he was done he was done. When we got home Avery was wonderful! he just wants to help out. He tells us when Hunter wants a "baba" and gets Hunter blankets and covers Hunter with a blanket and gets under the other side of the blanket and lays with him. He loves to give Hunter kisses. They are both so wonderful :)

Brothers

2 tired boys

Welcome Home Hunter





June

Well, we sure have been staying busy. Big Brother Avery is turning 3 on the 18th, Mommy and Daddy turn 25 this month AND celebrate a wedding anniversary! On top of that Avery is starting speech therapy, we've seen everyone from the eye doctor to the ENT to make sure everything else is functioning ok for him. He doesn't use his upper lip to articulate words, and he has a slight tongue tie (very little).  We met with Hunter's plastic surgeon and were very impressed and pleased with him! He pretty much came into the room, shook our hands and said, "Don't worry, I Got This!" He's a very pleasant guy. He also has ALOT of experience under his belt. It was very comforting to meet with him before Hunter is born. Other than that there's not very much to share this month. Everything is moving along. I feel as though I will be pregnant forever. I barely get ANY sleep at night and things can NEVER be "Just Right".